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"What cannot be said will be wept." Sappho

Tuesday, January 5, 2016

Baby Boomer's Last Revolution: Changing the Way We Die

Baby boomers have spent more than half a century revolutionizing the way we live. Now it is time for us to revolutionize the way we die.

We came of age in the post-WWII era of complacency, consumerism, and conformity. We said the Pledge of Allegiance every morning in school (with "under God" added in 1954 to show the godless commies what was what) and we watched "Duck and Cover" films in school to show us how to respond to a nuclear attack. We were taught the story of unalloyed American exceptionalism in school. America beat the Nazis and polio. We believed in our heroes, from George Washington to Mickey Mantle. Our president was a war hero. Our corporations were benign, promising us better living through chemistry. We ate PB&J on Wonder Bread that was supposed to build strong bodies twelve ways and we had Twinkies for dessert.

Then we grew up seeing our leaders murdered: John Kennedy, Malcolm X, Medgar Evers, Martin Luther King Jr., Robert Kennedy. The U.S. sent troops to Vietnam and war turned out to be more complicated than we had been told. Politicians did not always tell the truth. Around the time we reached voting age, President Nixon was resigning in disgrace.

And so we became the generation that did not trust anyone over 30. We challenged everything the grown-ups gave us from the draft to healthcare to the toxic substances in air, water, and our homes and the products we produced and used. The "Our Bodies Ourselves" movement shifted the focus of medical treatment to give patients better information and wider choices. Was your father in the room when you were born? Did your mother get to decide how she wanted to manage medication for labor pains? You're welcome.

We saw injustice and so we protested and we challenged more. We changed the laws to protect the rights of women, minorities, the disabled, and the LGBT community. We made consumer goods safer, especially cars and toys. We created the modern environmental movement, stopped the damage to the ozone layer, took lead out of gas, and brought our lakes back from near-death.

We understand that there is much more to do, and we have seen some of our most important efforts rolled back or distorted beyond recognition. But we have never given up on our commitment to questioning what is and pushing for what is better.

Here's a secret -- we're delighted when you blame everything on us. First, it means you learned our most important lesson about your obligation to recognize and repair the failures of the past. And second, we know how cycles of history work, which means that your children will think we were just great, while they are carrying on our tradition of rebelling against you.
We can handle whatever you've got. We survived disco, yuppies, Iran-Contra, the Starr report, the dot.com bubble and the sub-prime meltdown. One word of advice, though: No complaining unless you have a constructive solution to propose along with it. Otherwise, it's just whining.

Before we turn it all over to you, though, we've got one last revolution: end of life care. We used to talk to our friends about caring for our children, about teething, homework, and college applications. Now we exchange stories about caring for our parents, about finding caregivers and assisted living facilities, about durable powers of attorney and navigating Medicare, about dementia and rehab after strokes. There is a growing body of literature by baby boomers writing about caring for their parents at the end of life including Roz Chast's brilliant Can't We Talk About Something More Pleasant?, George Hodgman's touching Bettyville, and Scott Simon's heartrending Unforgettable.

A director of an assisted living facility says that she began her career helping people in their 50s care for parents in their 70s, but now works with people in their 70s caring for parents in their 90s. The advances in treatment for heart disease and cancer have given us more time than any generation in history with our parents, for which we are grateful beyond words. But it has also given us unprecedented health care challenges with the number of people around the world living with dementia predicted to rise from 44 million today to 135 million by 2050. Our health care system is still too focused on treatment rather than prevention, which means that near-endless expensive treatments are covered, whether they will improve the quality of life or not. But until 2016, there was no coverage for conversations about whether a patient wants those treatments.

The numbers in the studies vary, but all of them conclude that a huge percentage of our health care costs are spent treating people in the last six months of life. Anyone who wants that six months should have it. But because doctors and families are skittish about asking patients what they want, too often the result is needless suffering. Over and over, my friends have told me, "I thought I was doing the right thing by seeking out the best treatment options for my parents and insisting on every possible procedure and medication. But now I realize that it was for me, not for them." Dr. Craig Bowron wrote in the Washington Post about the way that family members, particularly those who have not been caretakers, rush in to insist that "we do everything we can," meaning as many medical procedures and treatments as possible. They often use the vocabulary of battle. "This person may think she is being driven by compassion," he says, but it is more likely to be a reflection of "the guilt and regret of living far away and having not done any of the heavy lifting in caring for her parent." It can reflect the adult child's own fear of death, loss, and lack of control as well. Bowron writes:

When their loved one does die, family members can tell themselves, "We did everything we could for Mom." In my experience, this is a stronger inclination than the equally valid (and perhaps more honest) admission that "we sure put Dad through the wringer those last few months."

One friend said no four times when doctors suggested he put his 96-year-old father, who had severe dementia and intractable pain, into hospice because, "I promised my mother I would not let him die." He thought he was doing what his parents wanted. So he insisted on hospitalization and treatment for his father, who could not understand or cooperate. Not many of us would choose that for ourselves, and we need to let the people we love know while we can.
Each person should have the chance to decide when it is time to shift from health care toward a cure to health care for comfort and pain management. That means giving us and our families the information and support they need. Death is not quick and simple, like in the movies. Just as they have learned to do with childbirth, health professionals need to learn to talk to patients and their families about what to expect. That knowledge is more important than any advanced directive or pain relief. Some initial efforts are confusing, even intimidating. A long check-list of choices about end of life asks us to project ourselves into choices no one can predict accurately. But important changes are happening now and other promising initiatives are on the horizon.

My patients have all taught me valuable lessons about what a "good death" might look like. Each one has reminded me that there is more to medicine than placing a line to monitor the heart, or performing an intubation. Just because more tests and procedures exist does not mean that we should perform them all each time. Sometimes the most powerful healing of all comes through the simple act of sitting and listening to our patients with compassion.
We know that 75 percent of Americans would prefer to die at home. Only 20 percent actually do. We also know that 80 to 90 percent of physicians would not want CPR or mechanical ventilation at the end of life. Doctors actively choose to forgo the suffering that takes place in our ICUs, because we've seen it and we know better. My goal is to close this gap, to educate my patients about their options based on open, honest communication. I no longer see death as a failure but as a place we are all headed at some point -- and if I can help someone live the fullest to the very end, I have practiced the best medicine.

A small town in Wisconsin is pioneering end of life conversations. Sarah Kliff writes in Vox that "La Crosse has, over the past three decades, done something remarkable: nearly all its residents have a plan for how they want to die." Even though consultations about end of life wishes are not paid for by insurance or (until 2016) Medicare, the health care practitioners of LaCrosse made it as regular a part of treatment as flu shots and questions about allergies to medication.

When patient preferences are known -- as they almost universally are in La Crosse -- people tend to select less aggressive courses of treatment. And this is what has earned the La Crosse model so much praise: it's shown a meaningful reduction in health spending as a side effect of respecting patient wishes.

California has followed Oregon, Washington, and Vermont in adopting "right to die" legislation. Patients who have been certified by two doctors as being within six months of death (at least one of those consultations in private to prevent coercion) and meet other criteria for autonomy and capacity will be able to choose to end their lives as they wish. As the Washington Post noted:

[Oregon] collects data on each case, and there have been no reports of coerced or wrongly qualified assisted deaths. The typical patient is about 71, suffering from terminal cancer, well-educated, with health insurance and enrolled in hospice. About one-third of prescriptions were never used, suggesting some terminally ill people are comforted by knowing they have an alternative to extensive suffering should they need it.

As of January 1, 2016, Medicare now covers consultations with physicians about end of life wishes. Contrary to Sarah Palin, these are not "death panels." The choices are all with the patient, not the government. Possibly even more significant, Massachusetts Blue Cross has now extended coverage for these discussions as well and other insurance companies are expected to do so as well. These are opportunities for patients to hear what the options are, decide for themselves what they want, and give their directions to the doctors who will be treating them. Unsurprisingly, these consultations themselves are a key factor in increasing the comfort level of people at the end of life because gives them a sense of control and closure. It is similar to the transformation of childbirth in the 1960's and 70's, giving women and their partners better information and more opportunities to create the experience they wanted for themselves and their babies. I like Katy Butler's suggestion of a "Medicare Part Q." It would "make the transition smoothly from useful curative approaches to those focused on sustaining my quality of daily life, to 'comfort care only' and, I hope, a gentle death at home."

Hospice and palliative care specialties are becoming more widely available and better resources for people approaching the end of life and their families. The arbitrary "within six months of expected death" standard is increasingly being replaced, allowing a patient to decide when to shift from medical treatment for cure to medical treatment for comfort and pain management. The UK is setting the standard for the rest of the world with about 30 percent of dying people receiving hospice services, many of them dying at home, as they wished.

The eco-burial movement provides alternatives to the toxic materials that have traditionally been used in embalming and caskets.

There is a new specialty called "death doulas," people specially trained to help those at the end of life and their families. Like their counterparts, the birth doulas, "they understand how to provide support, counseling, and treatment. And friends and family members can serve as "death walkers" for those they love. This description of a granddaughter's last hours with her grandmother is beautiful:

My sister and I sat on the bed with her for many hours the last week of her life. I would rub her hands, wash her face with a warm cloth, sing to her, tell her some of my favorite memories and sometimes simply hold the quiet space as she slept.

Former columnist Ellen Goodman has developed The Conversation Project to help families discuss end of life issues. She writes:

The last thing my mom would have wanted was to force me into such bewildering, painful uncertainty about her life and death. I realized only after her death how much easier it would have all been if I heard her voice in my ear as these decisions had to be made. If only we had talked about it. And so I never want to leave the people I love that uneasy and bewildered about my own wishes. It's time for us to talk.

Other resources include "Let's Have Dinner and Talk About Death," and even an app called Cake, which helps people consider the options for funeral preferences and financial planning, bucket list items like places people want to see before dying, and strengthening their connections.

Talking about the end of life is scary. Not talking about it is worse. We need changes and the baby boomers are our best shot for making them. I am trying to have that conversation with my parents and am determined to have it with my children. As Atul Gawande says, "the ultimate goal is not a good death but a good life - all the way to the very end."

About Me

This is a place to share stories of the end of life: care-giving, grief, loss, palliative care, legal and medical paperwork, living wills, funerals and memorials, condolence, bereavement, isolation, comfort, and hope. By sharing our stories, we learn, we grow, we make things better.